Living through chronic autoimmune disease is miserable, especially when it impacts your nervous system and strips you of everything you hold dear in your life. 32 doctors told me getting better would be impossible and laughed at my questions. But, I found success in healing my chronic autoimmune disease naturally. In this article, I'll share with you my experiences and lessons learned.
If there was one phrase that I most often heard during my twenties, it would be:
But you don't LOOK sick…– said way too many people
This phrase is cringe-worthy to anyone with unexplained symptoms, undiagnosed illness, autoimmune disease, or “hidden” health problems.
No, I didn’t look sick. Not until my face went pale while my eyes rolled in the back of my head as I dropped to the floor.
Even that was ill-received by the General public, including one time being kicked out of Walmart for being an inconvenience on the floor.
When You “Don’t Look Sick” but Endure Chronic Health
I'm sure you remember as a child hearing “don't judge a book by its cover,” likely on multiple occasions. Being chronically ill is no different…
- You become judged.
- You’re deemed unreliable.
- You’re deemed unemployable.
- You isolate yourself.
- You become depressed and have an understandably dim outlook.
- You become self-destructive and overly self-critical
- You dream of being physically capable again, which only drives an unhealthy obsession about what you’re unable to do.
There is little enjoyment to life, and your issues are indeed a big deal, although you tire quickly of being told they aren’t.
You know something is wrong with you, whether you’re correctly diagnosed or not.
You know the meds don’t help, but you embrace the nasty side effects anyways because everyone at the hospital convinces you that your situation would be worse without them.
No one seems to fully understand when you describe your symptoms.
And more often than not, doctors want to tell you what you're feeling and document what they want to see, instead of actively listening to understand.
To make matters worse, most doctors just seem to want to prescribe enough medication to numb the symptoms instead of treating the underlying cause. Apparently, that would just be too much of a process to figure out, or they just “don’t know” what is going on or where to start to figure it out.
Being an unexplained, undiagnosed patient with a severe neurological disorder is a form of imprisonment.
You’re stuck in a broken body, remembering the days when you felt invincible and unstoppable. I know this feeling all too well.
My First Attempt To Write About My Experiences in 2009:
In 2009, 4 years after my symptoms started, I attempted to write about how I felt. I was frustrated by the “hey how are you?” “not really feeling well” “oh, ok, I hope you feel better soon” superficial conversations. No one really understood why I didn't feel well or what that meant, and I was exhausted from attempting to explain it while fully fatigued.
Many of you don't understand what I mean by “I don't feel well” or what I go through nearly every day. I'm not sure exactly why or what happened, but I am one of the 200-something-THOUSAND US military veterans to have come back from the Middle East area with a complicated neurological disorder that causes disruptions in my everyday life.
In 2007 I was diagnosed with Dysautonomia, and wrote a note about it. Since then my symptoms have progressed and my doctors have been working on trying to figure out what and why: two questions that have proven to be nearly impossible to answer.
I decided to write a little bit about it to give you all the chance to very basically understand what I go through:
Each day my body becomes completely tingly mixed in with pain throughout my muscles and joints. I have many bouts of shortness of breath with chest pains (especially when I walk up stairs and talk too much or too fast), and experience many debilitating headaches.
Sometimes I have a hard time with overall functioning. It gets to the point where I can't figure out how to speak or move my hands or legs, even though I can think just fine and can still hear all that goes on around me. Quite often I lose my balance, sometimes I stumble… a lot, sometimes I can’t walk well, other times I can’t walk at all.
Sometimes I need help walking from a cane or a walker, sometimes I’m stuck wheeling around in my wheelchair, and some days I can't even get my body out of bed. Regardless you’ll still typically see me with a smile on my face whether I feel like it on the inside or not.
Often I'll think I am acting completely normal, but come to find out later that I wasn't. I do lose full control of my body at times too. Sometimes it looks like I'm daydreaming, meanwhile I'll think I’m screaming, totally unable to comprehend why people around me won't respond. I have extreme cases of confusion where I can't figure out where I am, what I'm supposed to be doing, or where I'm going.
Often after studying for my college classes, I end up really upset because I wouldn't be able to figure out what subject I was reading about or I'd realize I was only looking at the letters because words didn't make sense.
Often I burst into tears for what can seem to be for no reason, but usually its out of frustration (though sometimes I can’t explain it) because I’m not physically capable of forcing my body to work the way it is supposed to, even if you can’t see it. Because I feel trapped, with no way out.
At least once I week I curl up crying because I don't understand why this is happening. I don't understand why I suddenly have physical limits. I don't understand why I have physical and mental limits.
I get horribly embarrassed when I'm in front of other people and suddenly can't walk… or fall unconscious… or start talking like a 2-year-old because I can't figure out how to force my body to function appropriately.
Thus, I only go out when I feel completely up to it, and typically go home early because I've realized when I start getting tired, my symptoms get worse.
I don't like people to see me like this, and I try not to write about it too much because I don't like feeling negative, nor do I like anyone else seeing me engulfed in negativity. I’ve never liked complaining, and I still don’t.
Each day it's been getting harder and harder for me to push through it, and the veteran’s hospital hasn't provided me with ANY of the help I need.
My support system has been getting weaker, and smaller. Part of that is my fault for pushing people away, and allowing those close to me to not fully understand what I go through.
If you’re wondering why we haven’t been as close as we used to be and wondering why I’m bringing up my health after so much silence… my not feeling well hasn't all the sudden sparked up again… its just getting overwhelmingly harder for me to push it aside or ignore.
My Reality for Nearly a Decade
There were a few days when I didn’t wish for my life to end. All I knew was pain, numbness, and suffering. It was my own personal Hell.
My symptoms started suddenly in October 2005 while stationed overseas in the Middle East. I was forced out of the Navy in November of 2008, and finally diagnosed in 2009 with complex partial seizures. In 2011 I was diagnosed with several autoimmune issues: chronic pain, chronic fatigue, fibromyalgia, lupus, demyelinating polyneuropathy, possible MS, and seven additional diagnoses that I can't pretend to be able to pronounce, spell, or understand. It felt like the doc wrote a death sentence. I walked out of my neurologist's office once again with no help, no relief, and no hope.
Later that year, I was denied homeless services from the local municipality and from the veterans hospital, both telling me to seek help from the other. Living off $974 each month for the little bit of disability I was receiving was not enough to pay for basic living expenses. Thankfully the man I was dating (now my husband) asked me to move into his guest room to ensure I would have a safe place to live and the support I needed.
At some point, when you walk through a life of complete misery… too broke to make changes you know you need, and too sick to make an income you know you need to afford to live… you realize nothing will ever change, and you're caught in a cycle of legitimate excuses.
You start to wonder and daydream… What if you could feel better??
When you're stuck living in miserable physical oppression, you have two options:
Accept living a life that sucks, barely able to hang on, filled with depression and anxiety
Find little changes that you need to create those changes yourself.
A Rude Realization and a Desperate Prayer
In 2010, I was fitted for crutches in the rheumatology office. I finally felt heard and understood by the professionals in that department. I was also terrified by an encounter with another patient.
While I was pacing the room so the nurse could gauge my walking gait, another veteran watched me closely. I looked up to see him crying, strapped into a machine that bicycled his legs for him as a form of exercise (he couldn't use his legs on his own). He sheepishly spoke to me, apologizing for staring, and mentioning I reminded him of himself 5 years prior.
I felt as though lightning struck me, booming thunder and all. That was not a future I would accept willingly.
Immediately, I was reminded of all the amputees I spent time with at the hospital after my medical evacuation from the Middle East. Their “other side” of healing was strapping on prosthetics and running triathlons.
I had never met another veteran with my exact same ailments, although I watched a 60 Minutes episode discussing more than 200,000 veterans with my same issues. But looking at this veteran in front of me, I was unwilling to accept my “other side” being over 300 lbs and bicycled by a machine until my life ended.
I don't remember how I managed to get home that day, but I do remember dropping to my knees sobbing, praying with every part of my being for God to end my life or heal me. I begged Him to make the choice, and I would accept either. But, I was done. I screamed out that I was done living in total and complete misery. Heal me or take me away, but stop the pain, stop the additional secondary injuries from falling repetitively. Stop the chronic isolation. I was done… completely.
I promised Him that if he healed me, I would never stop sharing my testimony.
Making a Choice
In 2013, I decided to take a chance and make a change. Nothing was helping. Nothing was working. I was continually getting worse. Medications worsened me, including hospitalizing me for pancreatitis and severe liver damage.
During that time, my aunt found a blog post written by a man who healed his diabetes by using food as medicine. Back then, functional nutrition wasn't a common topic to find discussed online (neither were discussions about using natural methods for healing). Reading his blog gave me a little hope.
During my next appointment, my neurologist made it clear a natural lifestyle would kill me faster than my condition and laughed hysterically at me and criticizing me until I left his office. I was desperate to end my suffering… so I started looking into natural health alternatives, figuring I had nothing to lose.
I was skeptical (did I mention hopeless??), and honestly prayed that my neurologist was right… that a natural health lifestyle would end my suffering, one way or another. I had attempted suicide multiple times, only to be thwarted by unconsciousness, seizures, or debilitating weakness.
No matter what happened… something needed to change. No matter what the results were, my suffering needed to end. I knew deep down that God was calling me to make some healthy lifestyle shifts, including gardening produce. And I knew with God, all things are possible. Though my faith was shakey at best, there was no denying I was intuitively led to start something new.
Starting a New Wellness Journey
We started out with cleaning up my food habits, fully embracing the paleo diet using the 30-Day Guide book. If you don’t know about the paleo diet, I strongly suggest looking into it.
Switching to the Paleo diet meant eating primarily veggies with a side of meat or other protein.
Eating according to the Paleo diet also means giving up all refined sugar, dairy products, wheat products, and processed foods.
It took more effort for me to cook than it did to deal with sugar cravings, so I had no problem I turned my eating habits upside down and trying something different. Thankfully I had the support of my boyfriend (now husband) to help me through it. He even built a garden for us outside, complete with hooking up a hose on a timer so I wouldn't have to worry about gardening when my body wasn't cooperating.
During that first month, he lost 25 lbs. I lost 10 lbs and significantly reduced my seizures.
Month 1 Results:
While the shift wasn't easy, and I admittedly missed several foods that had previously made appearances on my plate regularly, my results were undeniable.
- My seizures reduced from averaging 6 seizures a DAY down to 2 seizures in that last week.
- I was able to walk up a flight of stairs unassisted (slowly)
- My dog accompanied me on a 1/8 mile walk… the first time in 7 YEARS!!
It didn’t take long for my skeptical perspective to change. God was working miracles.
In fact, I noticed such dramatic positive results, it sparked the research addict in me to look around our home to see if anything else could be contributing to bogging my body down and preventing healing. (I was trained in information research analysis by the Navy and remain highly skilled at it.)
Month 2 Actions
Looking through my research into standard household products, I was utterly disgusted by what I found.
Even the products labeled as “green,” “natural,” and “safe” had some nasty ingredients in them. Ingredients that may produce significant health issues, birth defects, and infertility… and all completely LEGAL for companies to use!
I learned that those chemicals could actually be absorbed in your skin in as little as 6 seconds… and in less than 30 seconds, those chemicals will make their way into your bloodstream, circulating through your body… causing problems with just about every type of cell and organ in your body.
Removing Harmful Ingredients From More Than Just Food…
With my husband's support, we overhauled everything!!
- Cleaners (kitchen, bathroom, car, garage, outside, laundry, carpet cleaners… everything)
- Hair care products
- Body soaps, washes, hand soaps… etc…
- Shaving products
- Lotions and skincare items
- Deodorants and antiperspirants
- Air fresheners
- Fabric fresheners
Everything in our home had at least one known harmful ingredient… most had numerous! And all had generic descriptive terms that were impossible to know… like “surficant” (a common practice to hide harmful ingredients).
And here I had thought that spending a little extra for “high end” products was doing the right thing… I was so embarrassed to see I was suckered into clever marketing… AND that it was preventing my body from healing.
I unknowingly paid companies to keep me sick!
Disgusted… embarrassed… betrayed… angry… words don't even come close to describing how I felt.
So angry… I did something about it.
Not only did I throw away two 13-gallon-sized kitchen trash bags full of harmful products, but I created an online course to share my findings with everyone.
Wasting Money: A Major Panic Attack
Seeing all that product in those two big bags… all I could think about was all the money I threw away.
I only made $974 each month on veterans disability… not even enough to cover my half of the rent, let alone utilities. And in those bags were several hundred dollars worth of items I had purchased and intended to use.
I literally threw away money. And it was trash day. And I had no idea how I would afford to replace it all.
I sat there in the window, crying and shaking as I watched those bags overflow the top of the trash bin. I sat there watching the garbage truck come down the road, around the bend, and in front of our house, still crying and shaking. I almost ran out as fast as I could to retrieve it all before it was dumped into the truck.
It took me MONTHS to afford all those bottles… some partially used… many still sealed, unopened.
And then the truck left. Our bin was empty.
And me… well, I felt a wave of relief.
It was all gone. I made a promise to myself that day… I would never, ever, willingly use a harmful chemical on or around my body.
Adding Essential Oils to My Daily Routine
I use a variety of essential oils in my daily routine that helped significantly with supporting my body through healing.
Essential oils, when used properly, make excellent additives to natural DIY skincare, cleaners, and therapeutics. There isn't a single household product that you can't make with essential oils. Plus, many offer promising (and well-studied) therapeutic benefits.
- Skincare additive/fragrance
- Haircare fragrance
- Room freshener spray replacement
- Neurological suport
- Digestion support
Frankincense, lavender, lemon, and copaiba were the main oils I used. I also used a few pre-made blends before gaining the confidence and dexterity to make my own (this is where I buy most of my oils).
Month 3 & My Health Results:
90 days after I began my wellness journey, I had my very last symptom… a grand mal seizure.
Since then, everything stopped: my migraines, seizures, muscle weakness, fainting, stumbling, confusion, tongue tripping, and vision fading.
I was able to start going for regular walks again (1-2 mile walks) unassisted, AND managed to slowly jog 1/8 of a mile WITHOUT collapsing afterwards!!!
A Year Later… Life Was Entirely Different
Fast forward to 2014…
I married and was able to have a child… although several doctors told me my body wouldn't be able to handle pregnancy and I would be risking my life and the baby's life.
God healed my body, so it made sense to decide whether to grace me with experiencing motherhood.
I still became exhausted rather quickly but slowly regained strength and endurance.
I no longer dealt with chronic weakness or unexplained muscle fatigue.
I was able to focus for longer amounts of time and remembered what I focused on (a major deal).
I was able to think clearly enough to proofread literary works, and started to volunteer my time to coach a few friends through using essential oils, and teaching a few coaches how to properly support clients who endured chronic health issues.
2 Years Later (2015) Symptom-Free, & Self-Employed
My family continued to eat a mostly Paleo diet with some organic ancient grains (Einkorn) now that my gut has healed. I’ve stepped up our essential oil use even more and found personal care products and skincare without toxins in them…. which means I no longer have to DIY or go without everything!
My husband and I are both feeling much healthier, more energetic, and better rested. I’m able to go for long walks (2+ miles) and still function without needing to sleep the rest of the day.
I have struggled with regaining fitness, but recovery is a slow process. I can’t expect myself to dive back into rigorous weight lifting and running programs as I enjoyed before getting sick, but I found satisfaction in continually improving.
My Employment Struggle
Since leaving the Navy in 2008, I've been unemployed… not by choice. I cannot count how many employers have told me I was “unreliable” because I can't schedule my seizures, fainting, physical weakness, or other symptoms. (Seriously… more than 12)
This means… I was still only making $974 each month… until I decided earlier in 2015 that I would no longer wait for a job.
I fixed my health largely by shifting my mindset to follow God's lead and thinking outside of what is normal… and it dawned on me that perhaps all my employment problems could be handled the same way.
In 2014 I started engaging in lifestyle coaching, helping coaches understand the mindset and struggles of their clients with chronic illnesses, but was providing that coaching for free.
In 2015, I found several ways to earn an income while still coaching, writing about my journey, helping friends create their own online presence, and endorsing some of the products I used that helped me live healthier.
Having an income other than my tiny amount of disability felt incredibly liberating.
FINALLY, I had an element of independence again!
I was FINALLY able to contribute to our family's living expenses after my new husband and I lived together for 3 years (out of the kindness of his heart) and my inablity to afford much of anything.
AND I handled income generation opportunities while taking care of my infant at home with me! Just the most incredible feeling.
2017 Update – Embracing Second Chances
I really do feel as though I have a second chance at life, and am working from home to help other people achieve their own personal success stories.
My 4-year-old is the most healthy child I’ve ever encountered… no one would ever know I had all the issues I did before having him. We also welcomed our second son this summer too… also healthy and built like a little tank!
Still 100% free from my symptoms!
I couldn’t feel more blessed with how my life has changed, and continuously enjoy seeing more success testimonies from the men and women I coach.
Most people who hear my story are amazed and can hardly believe how much health strife I’ve endured. As miserable as it was to go through, I’m thankful to have experienced it because it gave me a perspective seen by few and motivates me to help other people like you overcome your own hardships.
That’s my mission now: to help motivated individuals overcome their struggles. To help people pull themselves out of their own personal Hell.
2018 Update: Transparency of My Life Story, & Where I Am Now
2018 was a physically stressful year. My husband returned to our family from being gone most of the prior 3 years to sea duty with the Navy. Within a month of him leaving his ship, we loaded everything we would need for two months of full-time RV living with our two young sons and two giant dogs, and moved from Virginia to Rhode Island… and a month later, moved again to Texas.
Not only did my symptoms not flare up once, but I handled the extra physical strain of not having a yard for the dogs and boys to run. I also managed a growing business, experiencing over 230% growth.
It felt amazing, freeing, and exciting to be able to handle all that life threw at us.
I cannot adequately describe the physical and emotional pain and horror of what I endured to anyone who hasn’t experienced it firsthand. All I can do is pay it forward and be there for anyone I meet (and you if you choose to take me up on the offer) to help coach and cheerlead through recovery. Because it is possible.
- You can live without horrendous pain.
- You can be free from a body that decides it randomly no longer wants to work.
- You can stop suffering and still live.
- Healing doesn't stop with regaining physical wellness
- There are always things you can do to make money from home, even when you're enduring chronic illness and have little time
You can take your life back after dealing with long-term chronic health issues! I know because I did.
If you're dealing with the “spoonie” life, struggling to manage day to day life because of health complications, know there is a way out, pray on it, and trust your God-led intuition.
Never under estimate the effects of attaining harmonious gut health. If you have autoimmune issues, then you also have poor microbiome balance in your intestines. It takes work, proper nutrition, and can be streamlined with the proper supplements, but it is fixable. Fixing your microbiome balance also positively impacts your mood, mental health, energy, autoimmune symptoms, and pain levels. The one thing I wish I knew when starting my healthy lifestyle journey: what gut health is and how to optimize it quickly with fermented foods, probiotics, and prebiotics.
Never underestimate the power of a quality support system (or person). Having adequate support is life-changing in so many positive ways. If you don't have one, pray on it. Ask God to bring someone into your life to help you.
Your health is not a direct correlation of how lovable you are, although you may at times try to convince yourself otherwise.
God loves you, even when you don't feel it is possible for anyone to. And with Him, ALL things are possible.
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Nicole is a wife, homeschooling mom, child of God, Navy veteran, information research analyst, and entrepreneur currently serving as a writer, healthy lifestyle coach, and flexible business strategist. Since earning a BA in Business from Virginia Wesleyan University, focusing on business strategy, she has also taken many courses and seminars in Psychology, Aromatherapy, Herbalism, Chemistry, Biology, and Theology. She loves gardening, needlepoint, hiking, animals, and teaching natural wellness and healthy lifestyle topics.